Why I am deciding to wait to take the MS medications

Community Member

After several months of soul searching and research, following my diagnosis of Multiple Sclerosis,   I made the choice to wait to take any of the disease modifying drugs.   It was not an easy decision to make.   I am not opposed to taking the medication.   I may take it in the future but right now I am choosing to wait based upon my individual set of circumstances.

Why would anyone make the decision to wait to take a drug which could potentially help?

I was asked this question by many people following my decision to wait.   I will try to answer this in the best way I can, as pertinent to my unique situation.

**At this point I need to clearly state that in no way am I advocating for anyone to make the choice I did.   The decision to take the MS drugs or not is your decision alone and should be based upon a thorough examination of your unique circumstances and with input from your doctor.   The point of this article, as well as a contributing article by Doctor Sethi, is to promote a discussion of how different people arrive at their decision to choose medication or not.  **

In my situation I was diagnosed in October of 2007 but I suspect that I have had my MS for some time but it may have been a rather benign case, as I had no symptoms (that I am aware of) following my first symptom of optic neuritis, for over ten years.     Currently, although I have many MS symptoms which come and go, I have not had many acute exacerbations.

As difficult as it was to do, I wanted to make my decision based more upon logic and reason than out of fear. Of course when you hear that you have a disease such as Multiple Sclerosis you are going to feel some fear.   There is a fear of the unknown and of the worst case scenarios.   There might also be fear of taking medications which you must inject, may have serious side effects, and long term effects we may not know about at this time.   I didn't want to either rush into taking medication or rush to reject the idea of meds based solely out of fear.   I also had to trust my gut feelings about what is right for me at this time.

I told my neurologist that I would wait on the decision to take any of the disease modifying drugs but would re-visit the idea based on two criteria.   If I were to have multiple exacerbations or if I were to experience symptoms which were severe then I would think about taking the drugs.   I also wanted to wait to see what my next MRI revealed.   During that first year I only had one exacerbation where I had to take Prednisone and my yearly MRI did not show any new lesions or changes in the size of my pre-existing lesions.   I realize that I am fortunate.   Had there been changes in my MRI I would have revisited the idea of taking the meds.

I must be perfectly honest here in that I also thought long and hard about the potential side effects (some of which include possible liver damage, flu like symptoms, depression, fatigue, nausea, increased heart rate, low red and white cell blood count,   hair loss, joint pain, difficulty breathing, to name a few), the cost (most of these drugs cost more a month than my mortgage), and the fact that these drugs would not help me with the symptoms I already have but would hopefully lengthen the times between relapses if I was lucky.

I turned to research to see how to define luck through statistics.

What does the research say about the efficacy of the most widely used disease modifying drugs?

It seems the efficacy rates for any one of the main four MS drugs including Avonex, Betaseron, Copaxone, and Rebif are all fairly low.  In a transcript of an interview with a Doctor George Hutton,  he says:   "Regarding efficacy, if you look across studies in general, we're seeing about a 30 to 35 percent decrease in relapse rate compared with placebo when those drugs have been studied."   It isn't the highest percentage one could hope for but as pointed out by my doctor, "This is thirty percent more of a chance for fewer relapses than you have now in not taking medication."   While she made a very valid point there were other things I wanted to take into consideration.

Then to confound matters even further, there is current research to show that half of MS patients don't respond to these medications, using MRI scans as evidence.

Some weeks ago we posted a news report from Steven Reinberg entitled, **"Only Half of MS Patients Respond to Interferon Therapy: Finding may support idea that multiple sclerosis isn't a single disease, one expert says"        **Basically they found that:   "To our knowledge, our descriptive study provides for the first time a detailed long-term analysis of MRI patterns of patients undergoing long-term interferon beta-1b therapy. The results show that on close monthly MRI inspection, approximately half of the patients fail therapy from an MRI perspective," the researchers wrote."   Granted one of the flaws of this particular study was the small (15 patients) sample size.   Yet this study does illustrate the saying that "My MS is not your MS."   It very well could be that Multiple Sclerosis is an umbrella term for varying forms of disease.   There could be different causes, different genetic influences, different levels of disability, and different prognoses.

It also shows that the MS drugs may or may not help an individual patient.

**With this great variability, how can anyone determine if the MS drugs will be effective for any individual with a diagnosis of Multiple Sclerosis?  **

At this time there are no definite biological or genetic markers to tell us who will respond to the MS drugs and who will not.   In fact in a recent research study ([Arch Neurol.](javascript:AL_get(this,%20'jour',%20'Arch%20Neurol.');) 2008 Mar;65(3):337-44. Epub 2008 Jan 14.) led by Esther Byun, to find out whether there are any genetic variations between MS patients who respond and do not respond to drug therapy concludes:

"Hence, in the absence of prognostic clinical, neuroradiological, and/or immunological markers of response, the question remains who and when to treat when adverse effects, inconvenience, and the cost of the drug are significant."

This study is also in agreement that "... while beta interferon is widely used to treat MS, as many as 50% of treated patients continue to experience relapses and worsening disability."

One could conclude that taking the MS drugs is no guarantee that it will be beneficial and one also has to weigh the other factors (side effects, cost, and possible medical risks) when making such a decision.

Can the type of MS you have make a difference in the decision to take medication or not?

This was definitely a factor in my decision to wait on taking meds.

There is debate about whether or not having a more benign course of MS allows one to be able to watch and wait instead of aggressively treating with the disease modifying medications.   According to a Mayo Clinic 2004 report entitled, "Patients with Multiple Sclerosis may want to take a wait-and-see approach to medication"   the author stipulates that those with no or low disability may likely stay that way and may be able to forego the medications.   They are specifically talking about the population of MS patients with benign MS who have had MS for 10 or more years who have and Expanded Disability Status Scale score of 2 or less.   Research cited in this article states that these people have less than a ten percent chance of developing significant disability in the future.   It is further stated that MS patients who have a more benign form of MS may have ongoing attacks but these individuals do not accrue any disability from the attacks.

How have others arrived at their decision to wait to take MS medication?

My fellow MS blogger and friend Nadja  seems to be in the same boat as I am.   She has decided to wait on taking the drugs.   Here is what she has to say:

"When I learned the side effects of the meds I felt less than enthused.   I wanted to try another approach and see how I felt before I made any commitments.   My neurologist agreed with my decision.   When I went for a follow up six months later we decided that I should get another MRI and then decide about meds.   I had no new lesions so we agreed that I could wait on the meds and just keep checking in for now.   We have not ruled
out meds for the future.I think taking meds or not taking them is a personal choice that must be made by the individual along with their family."

Again I wish to caution that there is research to make a case for any choice you make.   The bottom line is, what choice can you live with?   Nobody has a crystal ball to know what the future will bring.   Nobody has MS figured out yet and why it attacks individuals so differently.   Listen to what your doctor says.   Listen to your family and friends.   Read and research as much as you can.   But in the end it will be you who has to live with this decision.

And now it is your turn to join this discussion

Have any of you decided to wait on taking the MS drugs?   Are there any of you who had taken the medications and then have chosen to stop?   What factors tipped you one way or another towards making your choice?  Do you have any regrets?   This is probably one of the most critical decisions for the MS patient to make.   We want to hear your stories.   Here is your opportunity to share your experience here with us.